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Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
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Cognitive Therapy

Discussion in 'General ME/CFS News' started by Yungas, Sep 29, 2011.

  1. Yungas

    Yungas

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    So's I see's my doc today about my m.e and end up getting prescribed amytriptaline (for sleep not depression) and cognitive therapy, now I know none of these will help me, but Im gonna try the cog therapy juuuuust out of curiosity.

    Anyone else tried this cognitive therapy?
  2. ukxmrv

    ukxmrv Senior Member

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    Yes, I've tried it a couple of times in the NHS under different hospitals. The therapists learnt a fair bit about ME off me.

    Amitrip was one of the worst drugs for me. Didn't help sleep, I wasn't depressed and the side effects were terrible. My GP claimed that they would get better over time but they got worse (stomach, weakness, dizziness, increased fainting, perpetual hangover feeling etc)
  3. meadowlark

    meadowlark Senior Member

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    I know several people who have had cognitive while going through depression or a stressful time. It helped a few, and didn't help a few others, in terms of looking at their lives through the opposite end of the telescope. My sister found it beneficial. So it's worth a shot, as long as no one tries to tell you that they are addressing your ME/CFS, rather than your coping skills.
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yungas,

    Don't know where you live, buy the CBT they push in Britain more than in the US (though they definitely have it here in the US too), is what i call 'evil' CBT. This is what they used in the big PACE study. The whole focus of it is to tell you you don't have a physical disease and the reason you feel bad is that you're not exercising enough and then you have to do graded exercise where they keep racheting up the exercise, which will of course make your ME worse.

    Regular CBT that they used for other diseases is fine- they help you not beat yourself up because you can't do as much as you used to; tell you to rest a lot etc. Make sure you are getting the latter.

    btw- there is a treatments section on the forum. this kind of post should go there.

    good luck!
  5. Valentijn

    Valentijn Activity Level: 3

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    Amitriptyline could help if your serotonin and/or norepinephrine levels are low. But high glutamate is more likely to be behind our troubles sleeping.

    Lyrica (pregabalin) might be more useful, since it transforms glutamate into GABA, both by directly reducing glutamate levels and by producing the substance that opposes glutamate.

    Rivotril/Klonopin (clonazepam), can be used in a low dose to enhance the effects of GABA, in opposing glutamate.

    There's also over the counter supplements that act in similar ways, but doctors that think you have a complicated and unusual depression are probably less interested in those :p
  6. Yungas

    Yungas

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    ukxmrv, I had similar suspicions myself it seems docs like to push amytrip for almost anything to do with sleep or depression.

    It seems like my doc is prescribing it for m.e tbh, I will see when I go for the actual "treatment".

    Wow, well just have to see what these fools have up their sleeve then wont we :D
    Im in Britain, will report back here on the ignorance level of docs.

    Interesting stuff, I don't have a big problem sleeping just mild insomnia, I think my doc wanted to address this because the only thing he can say about m.e is c.b.t
    I dont think the prescription is worth walking to the pharmacy for really, maybe if he prescribed something good like morphine.
  7. Ian

    Ian Senior Member

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    cognitive behavioural therapy is like beating a dead horse
    Desdinova and Enid like this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yungas,

    Here is the definitive article on CBT/GET. I really suggest you look at it and give a copy to your therapist.

    http://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf

    "We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful rehabilitation therapies, such as CBT/GET."
    Enid likes this.
  9. ukxmrv

    ukxmrv Senior Member

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    Check up on where the CBT will be first Yungas or you may end up with a psychiatric diagnosis on your medical records. Nothing wrong with that if the CBT helps you but if not you may find it harder to get doctors to take your seriously after and any subsequent insurance issues can get tricky in the UK.
    ixchelkali likes this.
  10. Bob

    Bob

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    ukxmrv... you made me chuckle... :D

    That's exactly what I'd expect from CBT!

    I had a similar exerience with group GET sessions. I only attended one session.
    Enid likes this.
  11. ukxmrv

    ukxmrv Senior Member

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    Thanks Bob!

    I found one therapist very open to education but the next had unhelpful beliefs

    The NHS owes me big time for all that training.
  12. fingers

    fingers Senior Member

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    CBT (Chuckles Baiting Therapist) can be quite good sport in the UK. Here in the south west (Devon and Cornwall), where we do benefit from the Atlantic swell, it ranks second to surfing.

    My own approach has been to do a bit of foreplay humouring, followed by kicking the shit out of them for taking the dosh and not challenging their superiors regarding the tosh that they are charged to dish out. The usual outcome is that, with tail between legs, they write a letter to one's GP stating that the patient is is well-informed about ME and therefore does not need to draw upon an already stretched service. After about an hour on the phone (wouldn't want to waste expense on travelling) they are usually desperate to agree with you that they have nothing to offer, that ME is caused by a virus, and that the Chuckles Baiting this particular Therapist are probably the best form of treatment you will ever get on the NHS.

    I am offering an advocacy service for anyone who would like me to represent them whilst engaging with the UK medical profession. I started off charging 500 GBP per hour for this, but now it's free, as I find it so easy and so entertaining. Please PM me for details.
  13. Bob

    Bob

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    I told the GET therapist that i could not incorporate GET into my lifestyle, as I already planned my life according to my energy levels.
    I said that if I did my quota of GET exercise, but then needed to go to the shop for something, or needed to visit someone, or do some housework, or go to the bank, then it didn't make any sense.
    Or if I had a relatively busy day one day, and intended to rest the next day, then it wouldn't work for me.
    Along with multiple other examples of why it wouldn't work for me.
    She got confused, and said it wasn't suitable for everyone.
    ixchelkali, madietodd and Yungas like this.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, NHS, MRC and NICE have severely refractory abnormal illness beliefs about ME. Their top brass have been throughly non-compliant to the required psychotherapy we have ordered them to attend to correct these abnormal illness beliefs. Thus they should be involuntarily committed to mental hospitals, forced to take anti-psychotics and exercise past exhaustion.
    ixchelkali and Enid like this.
  15. Astrocyte

    Astrocyte

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    Well ukxmrv you must have been very convincing and had some serious influence ;-) to the point that NHS abnormal illness beliefs have been corrected!

    Im currently doing CBT at Barts (home of Peter White) or rather Im receiving therapy from a psychologist there. Seems as if there has been a big change from what youve all experienced.

    Ive done 5 sessions so far and found it surprisingly helpful (certainly surprising to me!). The psychologist made it clear that this was not a cure but would hopefully help me to manage my illness better. Not once has she challenged my illness beliefs. The aim is to find as fulfilling a life as possible given the constraints of ME.

    So far weve covered mindfulness and developing the observing self (as suggested by Jon Kabat Zinn). Weve covered pacing (yes really!) Weve also looked at where the strain in life comes from, how to reduce that and how to look after myself a bit better both emotionally and physically. Its given me some unexpected and very welcome insight. Ive found the therapist very kind and supportive. That in itself is a nugget of gold in a doubting world.

    I feel a bit of a dick for declined to do it for two whole years. My only complaint so far is that they leave it to ill-informed people in the US to tell the rest of us what is happening in an UK NHS clinic. I think its important for people to be given some up to date facts (about whats going on at Barts anyway) otherwise they might do what I did and avoid something potentially really useful.

    As a note to Yungas. I think its essential to feel comfortable with your therapist and make sure they are knowledgeable about ME. If either of these components are missing youll probably be flogging a dead horse. Im interested to know whether you are going to an NHS specialist clinic or will it be attending locally via your GP surgery? Anyhow, good luck!
  16. Bob

    Bob

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    Hi Astrocyte,

    A big welcome to the forum to you.

    It's great to hear that you've gained so much benefit from the therapy. It does sound helpful.

    It's not entirely clear what you mean in your post, so would you mind clarifying please?...

    Are you receiving CBT from a member of the Barts team, or are you receiving another type of therapy from a psychologist based at Barts?

    What you describe sounds more like a lifestyle management course, to help you cope with living with a chronic illness, rather than a CBT course designed to alleviate you from a fear of activity.

    I'd be very grateful if you could clarify.

    Thank you.

    Bob
  17. Valentijn

    Valentijn Activity Level: 3

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    Hi, Astro. I go to a real clinic in the Netherlands where the doctor first prescribes the generally useful supplements, and other drugs as needed to deal with the symptoms, as well as referrals to cardiologists and such as needed. Do you have any of that sort of treatment offered?

    It's one thing for a shrink to say ME is real, but what's the point if he's not treating it like a real illness?

    It's also been mentioned in the CBT advocated for ME/CFS that the shrink should not challenge the false illness belief directly, but still aim for the same goal (convincing you to try to do more than you think you can). Hopefully you lucked out and got a good therapist, but you might want to be careful that you don't get played.
  18. ukxmrv

    ukxmrv Senior Member

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    Astrocyte,

    Barts is a place that I would avoid because I want real physical treatment for a real disease. I've spoke to patients at Barts, a couple of the staff and I know what they do and think.

    You spoke about the help you are getting but all of that could be gleaned from books and magazines. I am pretty clued up when I got ME so lifestyle advice wasn't something I needed. Some do though.

    Pacing as you probably know was developed by ME patients in the 80's when we fought against the exercise regimes. We taught to some NHS staff so it was not only through my efforts that they are getting educated.

    What I need is the real physical stuff to cure the disease I have. A cancer patient wouldn't be happy with what you are getting. You shouldn't unless you value a hand to hold more than a cure / real treatment.

    If you take your rose tinted spectacles off for a moment and look at what Barts is contributing through Peter White you will find threads on here about the PACE trial disgrace.
  19. Wildcat

    Wildcat Senior Member

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    Bart's is one of the UK epicentres for the CBT/GET progamme.
    .
    I don't suppose, Astrocyte, that you have seen the GP training videos for 'handling' 'CFS' patients, which specifically train the doctors to 'not let on' to the patients that the medics and therapists believe that sufferers have illness beliefs and are really psychosomatised. The objective is to stabilise patients, then increase activity, on the model of 'activity avoidance'.
    .
    I have been assessed by a Barts specialist - Barts is Wessely School CBT/GET through and through. The 'soft' version is mindfulness, convincing the patietns taht its all about 'helping them live with' the illness... but its still the psychosocial construction of ME that excludes any useful tests and biomedical treatments.
    .
  20. Wildcat

    Wildcat Senior Member

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    The doctors and therapists at Barts won't overtly challenge your supposed 'false illness beliefs' directly - because they have been trained to hide what they really believe.
    being likes this.

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